SARS-COV2 Pandemic Serosurvey in a Rare Disease Population Research

Posted by MGMolly @Erinmfs, Mar 10 11:17am

I’ve been asked to participate in an NIH research study titled above! Has anyone else? Here are some of the details. I’m to receive my kit next week.

STUDY TITLE: SARS-COV2 Pandemic Serosurvey in a Rare Disease Population

You are being asked to take part in a research study at the National Institutes of Health (NIH).

IT IS YOUR CHOICE TO TAKE PART IN THE STUDY
This study is entirely voluntary, and you are not required to participate. If you join this study, you may change your mind and stop participating in the study at any time and for any reason. In either case, you will not lose any benefits to which you are otherwise entitled. If you do choose to leave the study, please inform the study team.

WHY IS THIS STUDY BEING DONE?
NIH is conducting this study to assist in grasping the impact of the newly emerged SARS-COV2 (COVID-19) virus as it is critical to gain a rapid understanding of exposure and immunity in the general population.

They want to identify if individuals with rare diseases were exposed to this virus in recent months, so we can further understand how those with rare diseases are affected.

They can investigate this by analyzing blood samples to see if we can detect antibodies to the SARS-COV2 (COVID-19) virus.

WHAT WILL HAPPEN DURING THE STUDY?
If you or your family member are less than 90 years old, have a rare disease and participated in the study “Impact of COVID-19 on People Living with Rare Disease and their Families” your participation will include:

· An over-the-phone consent.

· An electronic questionnaire (This will ask demographic and general health questions)

· One at-home blood collection. You will perform a finger prick on yourself or your child and then collect your own blood to send to us per our instruction. The collection will be less than ¼ of a teaspoon of blood.

Your sample will be stored for possible future research. If you do not wish for samples to be stored, you should not participate in this research study.

Okay – now I read the brief…this should be very interesting.
Do you know if you had confirmed or suspected Covid-19 during the past year?
A note of curiosity – has your registration with Cleveland Health led to participation in any other studies?
Sue

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@sueinmn

Thank you for sharing. For anyone interested in participating in this research effort (Covid or other topics) here is a link to the website, which describes the program and the opportunities: https://allofus.nih.gov/
Sue

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yes! your link is shorter than mine! The lady who did the phone screen for the study here said that participants were selected based upon a COPE survey that we were asked to respond to. Basicly the COPE survey was something like 'how depressed are you, how are you coping with the quarantine'.

I have participated in one on-site study at the NIH, and had my DNA tested there. The Human Genome Project. That's how I found my way to Mayo, the study before continued with Mayo Neurology. Then, I received an invitation to participate with All of Us . And I continue to do so.

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I received my kit this past week, and I lanced my finger, sampled my blood for the specimen collection kit, and returned it the same day. The kit came from the University of Pittsburg, but I sent the specimen directly to the NIH.

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I wanted to add something that is not common knowledge here, and that is if you are seen or participate in a research study at the NIH, you may not receive any diagnosis or results! That was a question I had in my first study and in this one. In my first study I was able to speak to the researchers onsite in Bethesda, but did not receive a diagnosis code. Same here, I won't know if I have antibodies to the virus here, I won't receive results. I did goto Mayo Neurology after my first NIH study, and we spoke about my experiences. I finally did request EHRs from the NIH and received them. I came home from Bethesda (my first study) with a DVD of my MRIs. I was told this is because the NIH has researchers, not doctors.

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@Erinmfs

I wanted to add something that is not common knowledge here, and that is if you are seen or participate in a research study at the NIH, you may not receive any diagnosis or results! That was a question I had in my first study and in this one. In my first study I was able to speak to the researchers onsite in Bethesda, but did not receive a diagnosis code. Same here, I won't know if I have antibodies to the virus here, I won't receive results. I did goto Mayo Neurology after my first NIH study, and we spoke about my experiences. I finally did request EHRs from the NIH and received them. I came home from Bethesda (my first study) with a DVD of my MRIs. I was told this is because the NIH has researchers, not doctors.

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Really good to know beforehand, Molly. Thanks for this information!

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The All of Us Antibody Study

Our researchers tested 24,079 blood samples that participants gave between January and March 2020. We looked for antibodies against the virus that causes COVID-19. Finding antibodies would mean that those people had already been infected, even though not many people were sick at the time.

What We Learned

We found that participants in 5 states had antibodies against the new coronavirus before those states initially knew about their first cases. This means the virus was infecting people in the U.S. even though doctors and scientists couldn't tell yet. The results can help researchers learn more about when and where the virus appeared in the U.S. early on, and how to design future studies.

The results of this study have been published in the journal Clinical Infectious Diseases.
https://allofus.nih.gov/news-events-and-media/announcements/nih-study-offers-new-evidence-early-sars-cov-2-infections-us

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